Saturday, October 29, 2011

What a Crazy Illness!

Sunset my last night at City of Rocks, NM

My stuffed nose disappeared the last day at City of Rocks.  Four days in the desert to clear up and acclimate!  I felt so good in the morning that I took a hike up the camp road at sunrise. 

Surprise!  Just because I feel energetic and strong doesn’t mean I can do anything aerobic—at least not yet.  I was pretty wiped out by the time I reached the top of the road, and instead of walking the entire loop, I returned down the hill (after resting for a while on a picnic table) and felt pretty tired most of the morning.  Next time I try taking a walk, I’ll do it on level ground.  At least walking to and from the bathrooms doesn’t tired me like it used to.  That is progress!

After City of Rocks NM, I spent two nights in a room made ‘safe’ for EI in the suburbs of Tucson.  The air in the room felt stale; but so did the outside air.  It was an attractive residential area, but only one window opened, and it seemed that the air exchange was lacking something.  The owner had converted her garage into a place safe for people with environmental illness, using metal shelving, mold resistant insulation, and tile with non-toxic grout.  I loved having a real kitchen and immediately drove to a supermarket which specialized in natural foods and bought a ton of fresh food, planning to make dinner for my wonderful host.

Within a few hours, I felt the lethargy and fatigue of my worst CFS, but devoid of other symptoms.  My host suggested it was a normal response to four hours of travel plus all the packing and unpacking.  I noted the possibility, took a swim, did some yoga, and was still tired.  I went to sleep at 7:30 pm and logged in more than 9 hours.  The second day, I felt the same lethargy all day, and the need to crawl into bed by 8 pm.  I tried spending most of the day outside, but it made no difference.  So I packed up my stuff and left early the next morning.

On the way out of Tucson, heading for Ajo, I saw a rental house share about 25 W of town which I really liked, so I decided to cancel my plans to drive all the way out to Ajo.  Instead, I headed up I-10 through Phoenix and then NW towards Kingman.  As I pulled out of Phoenix towards Wickenburg, where I’d planned to stop, the air felt clean and fresh (and significantly cooler).  I missed the RV park, and it was still early, so I continued heading north towards Burro Creek (land maintained by the BLM) which I reached just before sunset, enough time to enjoy the stupendous mountain views, find myself a site, and locate the bathroom.  I felt fabulous even though it was windy and cold – conditions that, in the past, would have sent me whining.  It was enough to put on a fleece jacket and some wood socks.  I made a sandwich for dinner and ate standing up at the side of the picnic table.  All the discomfort in my feet and head that gave me orthostatic intolerance in Tucson was gone!  Wow!

View from Burro Creek Campground

There’s not much to do after dark in the wilderness without a tent and lights (both tucked away in the car).  After listening to two CD’s, I was still not tired, and so I got out my computer and started writing this blog.  So much for my Tucson hosts theory that I was tired from packing and driving 4 hours!  I did all the same activities today, even drove an hour further, and continued to feel better as the day progressed.  Does that make sense?  Not based upon my previous experience of 20 years with CFS.  It only makes sense when I think of myself having Environmental Illness (EI) in which certain (unidentified) pollutants and toxins that I inhale or touch are having a profoundly negative effect on my brain and body.  When I get away from them, my body starts to function better.

The air is clean and fresh out here.  The sky is amazing out here.  There are no lights anywhere, not even on the bathrooms at the campsite.  You can see the milky way streaking across the sky.  I’m at a slight elevation (the road was uphill nearly the entire way after Phoenix), and mountains rise on four sides.  The wind whips through the valley, and the temperatures are in the low 60’s and dropping, but with my toasty down sleeping bag and wool long underwear, I have no fear of the cold. Now, after a full day of activity, I’m barely tired. 

Meanwhile, I’m so pleased to have escaped the ‘chronic fatigue’ I experienced in Tucson.   After living with it for 20 years, I have such tremendous joy at my newfound freedom from it.  All I need to do is live in the wildnerness!  Aaagh!  I want the modern conveniences of plumbing and electric and a nice kitchen again.  They’re no longer ‘conveniences’ but ‘necessities.’  And I miss easy access to internet and land line phones (because the cell phone hurts my ears). 

Even though sleeping in my Toyota Avalon is not an experience in comfort (for one thing, I’m a few inches taller than the car is wide, so I need to keep my knees bent all the time), I felt so good in the morning when I awakened that I decided to walk down to the gate to pay my fee.  When I got close, two huge bulls were grazing inside the campgrounds, and a herd of calves and cows were standing outside the cattle guard looking in, afraid to step on the metal slats.  One cow was trying to slide in around a rock at the side of the gate, but not fitting through..  I walked back to the car to get the camera, but when I returned, the calves and cows had dispersed.  It didn’t take long to pack up and head to Wikiup for a hot breakfast.  From there, it was almost another 2 hours to Dolan Springs.
In my fantasy, Dolan Springs was to be the wilderness experience near a quaint little town.  If you look on the map, it’s clearly in the middle of nowhere, with state parks and wilderness areas surrounding it, the west rim of the Grand Canyon 40 miles away, the Lake Mead recreation area north and West, the town of Kingman about 40 minutes south. In my fantasy, Kingman would have a great supermarket with lots of organic foods and a Trader Joes.  I stopped for gas at a shopping center that had all the stores normally next to Trader Joes, but no Trader Joes. 

North of Kingman the landscape changed.  No more stately Saqqara cacti, just acres and acres of sandy dust and little shrubby bushes.  I was quite disappointed, and for whatever reason – the mysteries abound—I started to get pain in my left sinus.  Was it emotional?  Was it because I got stuck behind a diesel truck on the uphill?  Was it the dust in the air?  Some pollution or industry around Kingman?  As always, many questions, no answers.  I guess it’s not for me to know the specifics, just to learn to trust my bodily experiences and honor them.

Dolan Springs looked like a typical Western town right out of the movies.  Dollar Store, no-name supermarket, one paved street through town, lots of trailers, RV’s, mobile homes, a few cafes, restaurants, a gas station, a chamber of commerce, a public library, police, fire, school.  I didn’t feel drawn to the place but I told myself to be open-minded.  Maybe the rental house would be lovely!

And it was.  All tile floors, all electric.  Roomy, clean, well-lit.  Just up against the eastern slope of the mountain surrounded by fields of Joshua trees.  Large empty garage in which David could paint.  The only thing that bothered me was the proliferation of aluminum foil, which he’d used to cover all the wooden shelves and doors, since many of his previous tenants were sensitive to wood.  I decided to give the place a try as the owner offered to let me stay for a night or a week.

We chatted for awhile.  I spent too much time in his house, which was not good for me.  I stopped in the public library – knew right away I can’t be inside that building – and had the same experience at the Dollar Store and the no-name supermarket.  What quality of life would this be?  Still, I figured the true test is how I sleep.

Fatigue again about 7 pm.  Kept myself doing odds and ends until 8:30.  No trouble falling asleep.  But since 1 am, I’ve been awake.  Turned off the heat and opened the window.  My left sinus swelled up badly.  So I finally got out of bed, and here I am, chirping away like a nightingale.  Chip chip chip.

My host in Dolan Springs told me that there was mining on the other side of the mountains (between Dolan Springs and Kingman) which had contaminated the water, but the well on this side is excellent.

Still, I am clearly reacting to something around here.  The combination of congestion and excitability (which I feel in my central and peripheral nervous system) is a sure sign of that.  Again, a mystery.  People say the air out here is good.  People say this is a great place to get away from electro-magnetic pollution.  Apparently, it’s not the place for me.

I’m sorry to move on.  I don’t have the vagabond mentality. I like to nest, organize my belonging, make a beautiful inside space and look out at a beautiful outside space.  So far only the rental 25 miles W of Tucson appealed to me visually, but the place was rather small for 2 people, and the sensitive owner has more restrictions that I think my husband could tolerate. 

So I guess that leaves me
    Still searching.

Monday, October 24, 2011

VIP, a very important peptide in CFS

You probably don’t have enough VIP.  98% of people with CFS don’t.  The MCS crowd hasn’t yet been testing, but when you learn what this neuropeptide does, you’ll probably surmise that low levels play a big role in that syndrome as well.

I’ve been thinking of going to Dr. Rea for allergy testing and environmental evaluation since I’m only about 3 hours from Dallas.  When I read that VIP, vaso-intestinal-peptide, plays a role in regulating sensitivity to chemicals and other inhalants, I started to wonder:  Should I just bumble along without knowing what I react to, continuing to use my intuition and somatic reactions as the most accurate barometer of safety?  And then continue working with the Shoemaker protocol until I can take VIP? 

It’s too soon to know the answer.  But I inform myself about VIP as I seek to understand my body and the way to restore it to optimal health.

In Ritchie Shoemaker’s 2011 IACFS paper, “Vasoactive intestinal polypeptide (VIP) lowers C4a and TGF beta-1, corrects refractory symptoms and normalizes abnormal biomarkers in patients with CFS”, the role of VIP is elaborated in detail.

He wrote:  VIP raises cAMP; lowers pulmonary artery (PASP) responses to exercise, blocks peripheral innate immune activation; reduces apoptosis of glial cells undergoing oxidative stress; raises VEGF; restores circadian rhythm; regulates response to olfactory stimuli in the suprachiasmatic nucleus; regulates dendritic calls; regulates Th17 function in autoimmunity; enhances IL-10 production; and modulates innate immunity.” 

Let’s put that into lay person’s terms. 
1.      Raises cAMP, short for cyclic Adenosine Mono Phosphate.  This molecule is one step away from ATP, the energy molecule, the one that mitochondria make in great abundance when they work properly.  All of us with fatiguing illnesses have low ATP, some from mitochondria damage, as Dr. Sarah Myhill has shown, some from interference in the citric acid cycle due to heavy metals (especially mercury and aluminum), some from poor metabolism of sugars that feed the citric acid cycle with pyruvate, some from a deficiency of oxygen transport into the mitochondria, etc.   From Wikipedia we read, “cAMP is… used for … transferring the effects of hormones like glucagon and adrenaline, which cannot pass through the cell membrane. It is involved in the activation of protein kinases and regulates the effects of adrenaline and glucagon. It also regulates the passage of calcium ions through ion channels.”   If you, like me, have issues with sugar metabolism (but not diabetes) and with adrenaline, you probably have low cAMP and would benefit from raising it.  In addition, cAMP affects cognitive function (not a big surprise since those brain cells of ours need to work properly.  By researchers have found a specific relationship between low cAMP and the cognitive deficits in age-related illnesses and ADHD.
2.      PASP (pulmonary artery response to exercise) may contribute to our exercise intolerance.  Shoemaker found that patients on VIP could tolerate more exercise.  It still remains to be seen if raising VIP eliminates the phenomenon Drs Snell and VanNess documented at Pacific Fatigue Lab, results unique to CFS in which repeating a sstress test within 24 hours showed markedly reduced capacity to produce energy and metabolize oxygen.  It would also be valuable to know if the changes in receptor activity in CFS patients during exercise, documented by Drs. Kathleen and Alan Light, ceases to operate after normalization of VIP levels.
3.      Peripheral innate immune activation makes us itch, swell from bugbites and scratches, get extreme reactions to poison ivy.  When I was first diagnosed with fibromyalgia, the rheumatologist scratched me and looked at the red welt which formed; from that peripheral response, he labeled me with FMS.
  1. Reduces apoptosis of glial cells undergoing oxidative stress. Apoptosis is another way of saying that brain cells which have been damaged by free radicals commit suicide (a normal process to make way for new, healthy cells).  Yet when there is more death than replacement, cognitive function deteriorates.  It’s been said that we don’t notice cognitive deficiencies until we’ve lost about 70% of our brain cells.  Yikes!  Good to reduce this depletion of our brains by restoring optimal levels of VIP.  If the cells don’t commit suicide, they can be repaired and restored to optimal health with reduction in toxins and inflammation and increase in nutrients.
  2. Raises VEGF, a molecule which helps us build new blood vessels.  When too high, VEGF can support the growth of cancer.  Too low means less repair of damaged vessels, especially those tiny capillaries which feed every cell in our body.  Hence degeneration as tissues which are deprived of the blood bath bringing oxygen and nutrients hold onto the toxins that reduce optimal function.
  3. Restores circadian rhythm, the daily rhythm of hormones like cortisol, an important adrenal hormone which serves as a buffer against stress and inflammation.  Cortisol is highest in the early morning, drops to about half by noon, and then slowly declines in the evening until we are desirous of sleep.   Good to reverse an inverted or flat rhythm; the former keeps us up late at night, the latter leaves us in perpetual lethargy.  Disturbed adrenal circadian rhythms have been found in CFS-ME, as documented by data at Sabre Sciences, Inc, a lab which offers salivary testing of the circadian rhythm.  The majority of indexed studies on adrenal issues in this illness looked a total serum cortisol, finding no pattern other than disturbed regulation of the hypothalamic-pituitary-adrenal axis, while salivary hormone testing measures free cortisol inside the cells.  If cAMP is low, cortisol transfer into the cells will suffer.  Consequently, when I tested an 8 am serum cortisol and did an 8 am saliva sample at the same time, we found a very high normal serum level and a below normal salivary level.  My adrenals were working fine, but my cortisol was all bound by globulins as it couldn’t be transported into the cells which needed it.  No wonder I couldn’t tolerate taking Cortef (a cortisol replacement).
  4. Regulates response to olfactory stimuli in the suprachiastic nucleus, e.g. to smells and chemicals that we breath.   Right now, those of us with MCS are hyper-sensitive and get the kind of response to 1/10000th of a scent or odorless chemical that normals get to amounts 10,000 times greater than normal.  (Got these figures from Martin Pall, whose theory of MCS involves upregulation of OH and ONOO with NMDA receptor hyper-response.)
  5. Regulates dendritic cells, immune cells which present antigens to other immune cells so that these antigens can be eliminated.  Dendritic cells are found everywhere the body is in contact with the external environment: on the skin and in the inner lining of the nose, lungs, stomach and intestines. 
  6. Regulates Th17 function in autoimmunity, a type of T cell made my interleukin 17 which is found in excessive amounts in MS, psoriasis, rheumatoid arthritis, and other autoimmune disease.  They serve an important function at the mucosal barrier by producing cytokines which stimulate these cells to produce chemicals to fight candida, staph, and other microbes.  Without Th17 cells, there are more opportunistic infections.  I’ll personally be glad to get this working again, as I have had psoriasis ever since I relapsed in 1994, candida from before I got sick, and a tendency to pick up everything that comes along.
  7. Enhances IL-10, an important anti-inflammatory cytokine which plays a role in the gut-based immune system.
  8. Modulates innate immunity.  This is the part of the immune system that we are born with, our first line of defense against invading pathogens.  It is the part that goes wacky in CIRS, and presumably also in CFS. 

From a study of 1682 patients meeting the criteria for CFS, 98% had low VIP.  In comparison, fewer than 10% of controls have low VIP.  The range for VIP that Shoemaker uses is 23-63 pg/ml.  Shoemaker is working with VIP replacement, as a patented hormone replacement has been produced by Hopkinton Drug.  A talk he gave to other physicians used to be available at . It can still be accessed as streaming video on Shoemaker’s site at

Excited?  You bet.  But beware of the fact that taking VIP right away doesn’t do any good.  As Shoemaker states repeatedly in his book, Surviving Mold, it’s crucial to eliminate environmental mold toxins, detoxify the mycotoxins in the body, and lower inflammation before you take VIP.  It might also be helpful to first balance some of the upstream regulatory hormones, such as ADH and cortisol.

After reading, I had to see what my own VIP levels was.  I was tested on March 11, 2011 for the first time, and my result, 23.5 pg/ml puts me in the low normal.  I don’t know from his IACFS paper whether this would be considered part of the 98% of low CFS patients or the 2% that is normal, but I suspect I would be considered normal, although barely.  Did my levels drop after 3 months of intermittent exposures to the toxic particles in my house that got stirred up as we cleaned and moved things? 

In the meantime, I’m not getting too far on the Shoemaker protocol.  Cholestyramine is step 3of a 12 step protocol, but I had to put it on hold.  I definitely feel better without it. There are other ways to detoxify biotoxins.  Perhaps following part of Rea's protocol (sauna, avoidance, desensitization) will work better for me.  But first I'll be meeting Dr. Janette Hope and trying CSM one more time.

Friday, October 21, 2011

Eye Candy

I wanted to take a thousand pictures over the last four days as I travelled from Dallas through Cache, Oklahoma, across the Texas panhandle, and through the mountains of New Mexico, but my camera was tucked away in my suitcase, which was buried in the tightly packed trunk.  So I have only pictures of the beautiful park in which I am currently spending my days:  a park in SW New Mexico known The City of Rocks.

Here’s how I got here:
My Dallas visit was aborted after the Marriott Residence Inn, which had promised me a green room, failed again to deliver close to the 3pm check-in time on Monday.  Angry and desperate for a place to sleep, I headed north on I-75 because it was the closest highway without construction near the hotel.  And construction-caused traffic jams in Dallas are ‘big’, like everything else in Texas, as I learned in the 25 minutes spent on a single exit ramp from I-635 in the misplaced hope that a personal visit to the Residence Inn would catapult action.  

About 45 minutes after running from Dallas, vistas of shopping malls turned to vistas of open pasture and undulating hills.  And they were hills, steep rounded hills, covered with green and yellow grasses and a few bushy trees.  When I paralleled the highway on a local road as I searched for my turn, the road hugged the hills like a roller coaster, climbing at grades of 9 -10% and dropping at the same steep rate.  The interstate running alongside smoothed out all the bumps, creating that seamless look of American uniformity which makes Walmart and Home Depot look the same in across the nation.

A half hour later, I turned onto I-35.  My plan was to go to Chickasaw National Recreation Area, just off I-35. where I would spend a day or two recovering and making plans to head west.  Divine had something else in mind, however, for as I crossed the border from Texas in Oklahoma, I jammed on the brakes and joined a long line of stopped cars.  On the right, was a long line of idling trucks.  Every now and then we inched forward, often because a pickup with 4WD had the good sense to cross the grassy divider and turn back into Texas.  My 2 WD sedan was not cut out for off-road travel, so I stayed in line while 5 miles ahead, police took their reports and ambulances rescued the bodies (survivors?) of an overturned semi blocking both lanes.  Unable to enjoy the delightful breezes on the prairie without the stench of diesel and gasoline, I rolled up my windows and took a car sauna.

Two hours later, I floored the accelerator and enjoyed going 75 mph for about 40 minutes.  Striking white cliffs and deciduous trees, some starting to turn color, ravished my eyes.  In the distance, black clouds and lightening bolts warned of dangers ahead.   Before long, I was driving through a thunderstorm with fierce winds arrived.  Passing the turn-off for Turner Falls (another lovely park I hope to see one day), I prayed the storm was local and small.  It was not.  And as it was pouring when I reached the exit for Chickasaw, I exited and headed West toward Cache, OK, with the intention of pulling into my old campsite and being welcomed ‘home’ by a familiar face. 

The route doesn’t look long on the map, but driving at sunset in rain with gusty winds, it turned into a very long drive.  Divine must have wanted me heading back there, for when I stopped at a filling station for directions, the person I asked said, “We’re heading there, just follow us.”  I did, and the rest of the drive went more quickly (helped by the fact that the car I was following liked to speed) with my leader taking me all the way to a familiar route 62.  I pulled into the station near the Wildlife Preserve just in time to receive the Monday night blessing from Guruji. 

No rain had reached this dry area, but the gusts of wind were fierce, at least 30 mph, perhaps more.  Dust and pebbles pelted the car windows.  I had organized my car so that, in an emergency, I could sleep on the backseat.  And that’s what I did!  I was so tired I didn’t care about stretching out my legs.  By morning, I felt well rested and had no sense of PEM (post-exertional malaise.)

The wind was still fierce the next morning, and the temperature had dropped into the ‘40’s and low ‘50’s.  It was easy to decide to head west.  But which way?

I chose the back roads, taking  OK 62 straight across the state of Oklahoma, where I enjoyed beautiful views of the mountains, golden pastures and green farmed fields.  Then I hit Texas.  The landscape turned flat.  I saw brown fields, yellow fields, and a few spots of green.  Cattle and horses.  More vast fields.  But soon I arrived at the foot of Palo Duro Canyon, the 2nd largest canyon in the US.  It runs 125 miles in length, NW to SE.  As I approached the SE corner, I enjoyed spectacular cliffs of red clay, and then finally, at a high point, a scenic view deep into the canyon.  The air was clean and fresh, but still very windy and cool.  Someday I will take the road up alongside the canyon and enjoy one spectacular view after another. This time, I needed to cover some miles and make it into New Mexico so that I could find a warmer, less windy place to sleep.

I didn’t realize southeastern New Mexico was so very industrial.  I arrived at Bottomless Lakes State Park, NM a couple of hours before sunset after driving through much commercial and industrial land.  It was a relief to find the park a considerable distance from houses and factories, even if it was SE of town, with the winds tending to come from the north and west.  The park is set among striking cliffs which rise above gently rolling hills covered with brush, and the altitude is slightly higher than the Roswell industrial valley.  Not surprisingly, the “bottomless lakes” had bottomed out and looked like oversized puddles.  From a distance they reflected the deep blue sky.  I took a site as far as possible from the lake at the highest point in the campground and pitched my tent on the concrete patio next to the picnic table.  Then I rushed back into Roswell for dinner and wifi and supermarket. 

As I returned to my campsite, my heart sank.  The factory was spewing sulfur-laden vapors into the air and it was floating towards the state park.  Light sparkled across the fields like a string of Christmas lights laying low to the ground.  I couldn’t figure out what the lights were for, but the risk was that it was something toxic.  What was I getting into?

Then I arrived at the campsite to find the raccoons had made a mess of my things.   Two sweaters had been unpacked from a zippered compartment in my suitcase, my toiletries were scattered everywhere, and the absorbent pads that I use for coffee enemas were strewn across the table, some chewed through, some nibbled at a corner.  How could I have been so careless!  I’d seen the open trashcans everywhere and assumed raccoons were not a problem here.  Perhaps the park deliberately leaves them open so that the critters can eat people’s garbage.  Whatever!  This coon must have sniffed out some fragrance in the pads, or my suitcase carried the residue of scent from a distant trip when I carried food in one of the pockets..  How disappointed the coons must have been to get a mouthful of absorbent cotton.  At least they didn’t gnaw holes in my sweaters.

I slept less well that night, every rustle sounding to me like raccoons hunting through my suitcase or my pots and pans – things I could have put back in the car but chose to leave out due to the late hour (past 10 pm) and the cold.  But thanks to the Trivedi blessing, I woke feeling well.  My nose was clear for once too! 

I headed further west, taking 380 from Roswell past a very cute town in the Capitan mountains, the first place I’ve seen in New Mexico that reminded me of little mountain hamlets in Europe.  From there, I headed towards Socorro and passed through an interesting area of lava rocks, where I stopped an enjoyed a fabulous view at the Valley of Fire Recreation Area.  The picnic tables are perched high on the side of a mountain which looks out over fields of lava rocks at distant peaks.  I met a couple from Snowflake, AZ, a locale which has an MCS community that I was planning to check out, but he told me that anyone with allergies to dust should keep away from Snowflake as they often have dust storms.  One less place to visit…. But also my options are narrowing down.

Others have written on “the Location effect” that they felt good in Socorro.   Consequently, I arrived there with great expectations, ready to turn west into the Gila National Forest and settle in.  But as I got off I-25, I was greeted by a smokestack belching black fumes into the air.  The Socorro valley has water, and therefore quite a bit of industry and farming.  The mountains of the Gila National Forest looked forebodingly high, and the wind whipped across my face blowing my hair into my eyes.  I made a U-turn and headed south, a Klondike ice cream bar in my hands.  Even before I’d finished the ice cream, I could feel my nose getting congested, and although this congestion lessened as I headed south into the higher temperatures of Southern New Mexico, it still hasn’t fully cleared up.

I saw some amazing scenery when I took Rt. 152 West to head into another part of the Gila National Forest, and steered through some pretty tight turns.  It was a slow ascent up to Emory Pass at 8228 feet.  If I’d read the map carefully and noticed that the high figures were the pass height, not the height of the surrounding peaks, I would never have thought about camping along that road.  I learned my lesson in Colorado:  don’t go into high elevations until you’ve had lots of time to adjust.

I tried to enjoy the mountain scenery.  There were evergreens and shrubs, a totally different look from the mountains East of I-25.  Both the foliage and shape of the hills reminded me much of the mountains in Tuscany where I lived for two years before I got sick.  However, the Italian Apennines and Chianti hills are punctuated with villas and villages, while the Gila mountains are completely uninhabited by humans. 

As the sun began to drop in the sky, creating a glare on my windshield that made it hard to see, I began to get nervous.  I would have to do the entire descent and then drive another half hour south to read City of Rocks State Park.  The State Park was my back-up location as I’d researched it in advance and knew they had electric and showers.  The challenge would be to get there before dark!  This was the hardest part of my trip so far!  It’s the first time I’ve felt anxious, but as I drove into that wilderness area, wondering when I’d get out, I found myself creating an inventory of what food I had.  Was it enough for 1 day, 2 days, 2 ½?  I reassured myself that I wouldn’t starve.  I didn’t have enough water to wash my hands and my dishes, but I did have enough to drink.  Every once in a while I’d remind myself of the beautiful scenery, then focus on the road again as it curved through 10 mph and 15 mph switchbacks.  When I came down the hillside and saw my first house I felt such a sense of joy and relief!  Civilization.  How wonderful.  Lights and telephones and modern conveniences.

I made it to City of Rocks in time to enjoy a magnificent sunset and a cold dinner.  I set my sleeping pad on a concrete pad, spread my sleeping bag over it, and tried to go to sleep.  To add to the tension of the day, an abusive man in a pop-up camper at the end of the RV park was yelling at his woman and cursing for over 2 hours.  I despaired of ever sleeping, but he did eventually shut his foul mouth and I dozed off under a dark, starry sky.

When I woke, I was congested and blowing and nearly incapacitated with PEM.  I rested during the day as much as I could, and felt a lot better in the evening.  But as the temperature drops, I find myself getting congested again. 

Allergic to the night?  Huh?

I’ve been reading in Dr. Wm Rea’s book about indoor and outdoor toxicity.  At night, the cooler air is denser.  Pollutants settle.  In afternoon, the toxic level is lowest.  Hence, my daily cycle of feeling clearest in the afternoon and getting more and more congested as the night progresses fits perfectly with the total toxic load of the outside air.  At night the wind also dies down around here.

What still seems strange to me is waking free of symptoms in the toxic air of Bottomless Lakes State Park.  Are natural pollutants such as terpenes from evergreens worse for me than industrial pollutants?  

Is this payback for 4 days of indulging in candy (eye candy) with all its stress?  

Am  I witnessing the pattern of masking and unmasking?

Masking is what happens as the body gets more toxic.  It ceases to react to toxins and pollutants.  Unmasking is what happens as the body releases toxins.  It becomes instantly reactive to pollutants.

As much as I miss wifi around here (I’ll drive 35-40 minutes to find a place in Silver City), I think it makes sense to stay for awhile here in the desert to see if I start to improve.  I had a lot of toxicity in the past week, with the mold, the driving, the industry, the lack of sleep, the stress, and the inadequate nutrition as I moved from one locale to another.  While I’m impatient to get into the Tucson area and check out two possible ‘safe for MCS’ rentals, I know I’ll get a more accurate sniff test if I’m in a less reactive state. 

Monday, October 17, 2011

Mold Hit

I was really stupid.  But my lax act was also due to the impact of mold on my brain.

Let me explain.

It rained.  I had a plastic tarp under my tent, separating it from the asphalt driveway.  After a rain, I normally take down the tent, hang the tarp on the line, and air out the bottom of the tent in the sun.  I say “I normally”, but truthfully, my role has been to remind David to do this. And David wasn’t here.

Alas, the rain continued for two days.  The following day was gray, blustery, and threatening.  I told myself I’d dry out the tent first thing Tuesday morning, but the dew was thick and the air was damp.  I chose instead to go out for breakfast and take care of my calls and errands.  I hoped to be back my late morning.

Alas, there were complications.  I couldn’t find a place for breakfast.  I suddenly had long phone calls because potential buyers made a good bit on the house.  I started to feel anxious about what he’d sell, where we’d store the rest of our stuff, where we would live, whether we should get a trailer specially outfitted for MCS or if I could find a safe house someplace.  So many decisions.  So little information!

I came back to the camp and looked at the sun beating down on the tent, on the plastic, on the black asphalt.  I felt tired.  I felt lazy.  I was hungry.  I couldn’t bear to spend however long it would take to take down the tent and then, within a few hours, have to set it up again.  I ate, rested, and it was 4 pm – too late to dry the tent out in the sun and set it up before dark.

By the next day, mold had started to grow on the underside of the plastic.  Water + plastic + 3 days = mold.

I was still in a dither the next day about the house sale, and still spent more time driving into town to get wifi and cell signal than my body could handle.  I got into the tent to sleep, lay my head down, and within a minute, my sinuses ached, my nose was stuffed and I couldn’t breathe.  I did the neti pot again, nebulized glutathione, and managed to get to sleep at some wee hour of the night.

Mold, I have discovered, affects my brain before it affects my sinuses.  So the dither I was in, the state of confusion (what to do, when, how, where, yes, no)—everything I chalked up to the house sale -- was exacerbated by the mold’s effect on my brain.  And that led me the following morning to totally forget about the wet plastic and my resolve.  Instead, I came up with several other theories:  the group of 100 young campers from Dallas who were upwind had brought in moldy tents; the newly arrived RV upwind was moldy; the whiff of mold I’d gotten when I started to take a walk in the woods (before turning around) was enough to trigger a reaction 4 hours later; my sleeping bag was making me sick.  I posted on Facebook about how hard it was to know the source of a hit.

Confusion mounted in my sleep-deprived state.  On Tuesday I had e-mailed Dr. Rea’s office thinking I might get some answers if I went down to Dallas and tried to stay in one of the environmentally-safe MCS rooms he rents.  I want to be able to live indoors again, with clean feat, plumbing, and electric lights.  But I still hadn’t heard back. 

So on Thursday, I called Dr. Johnson’s office (Dr. Johnson advertizes in the chemical injury network newsletter, Our Toxic Times.  He worked with Dr. Rea for many years before going out on his own.  I asked about MCS rooms, and they sent me to the Marriiot’s Residence Inn.  The room didn’t have all of the environmentally safe precautions Dr. Rea’s assistant had described to me, but I thought I had remembered incorrectly.  And in the state of a moldie turned country bumpkin, it never occurred to me that there was more than one Residence Inn in Dallas (I think there are 8 of them!).  And so I booked myself a ‘green’ room for a week and then telephoned Dr. Rea’s office to make an appointment there.  I had two Dr.’s appointments in Dallas and a room.  I was set to go.  I would leave my tent at the campsite, take only the essentials, and if I couldn’t tolerate the room, I’d return the next day.  That was my wonderful plan.

Although I slept well Thursday night (having been deprived of sleep the previous night), all the issues of sinus congestion, memory lapses and mental confusion increased.  I had a Master Blessing Friday morning and felt fabulous most of the day.  I wrote up my questions for the Doctors and wrote up a one page summary of my recent labs.  I took the longest walk I’ve taken in 3 years: a 20 minute brisk walk.  I got into the tent just after dark and read lying down.  By the time I was ready to turn off the light, I had a swollen gland and knew I was in trouble.

Hard pounding.  Jittery.  Restless. 

I lay in the back seat of the car wondering why I was conducting this experiment.  Was it so important that I be able to sleep in the car (in a fix) when I had this comfortable sleeping pad lying on the floor of my tent just a few yards away?  I got up around midnight and went into the tent.

Instant congestion.  Unable to breathe.  Mucous production.  I lay still and breathed through my mouth.  I sat up.  My nose cleared a bit.  I lay down and got more congested. 

By morning I’d figured out the source of mold was right underneath the tent.  I meditated in my car and slept for an hour at the cusp of dawn.  As soon as daylight made activity possible, I took down the tent, got a neighbor to remove the wet plastic, and aired out the tent.  The tent bottom didn’t look bad.  There were a few spots of dirt but not many.  It might have mycotoxins in it now making it unsafe.  I hope not.  It’s the only protection from the elements I have.  I spent the rest of the day cleaning everything thoroughly, packing up the car for my journey, and blowing my nose which was running like a dripping faucet, unstoppable.

My last night at the nature preserve was wonderful. I slept under the stars in my sleeping bag and a Walrus Bug Hut (mesh netting to keep the mosquitos from biting around sleeping bag and head).  I woke with an almost clear nose and started on my journey. By the time I arrived in Dallas at the hotel, my nose was clear.

Enter more complications.  The Residence Inn had my confirmation number but no ‘green’ room booked for me. The only good thing was that the desk clerk didn’t blink an eye when I walked in wearing my respirator!  They are used to chemically-sensitive people because their 4 green rooms are often occupied by Dr. Johnson’s patients. 

Dr. Rea’s patients tend to go to a difference Residence Inn in a different section of Dallas.  This I learned from voicemail messages from Dr. Rea’s office that I’d forgotten to check both Friday and Saturday. Another memory lapse.  Of course there were no vacancies at the other place.   But there were environmentally safe condos about 5 miles from Rea’s office.  So I called there.  And although there were still no vacancies (I had checked back on Tuesday or Thursday, I no longer remember,) the owner graciously offered to let me crash in the sauna room or storeroom.

That’s where I am now.  I knew the moment I walked into the space that I wouldn’t tolerate it.  I spent a few hours outside in the garden enjoying the use of free wifi and talking to patients of Rea and Johnson.  I met many people who have made great progress under these Dr’s care.  Some are still sick, but no longer incapacitated and close to death.  Others have flown the coup and gone on to live productive lives.  I learned that Johnson is perennially late and that Rea fits everyone into the same program.

But the most important thing I learned is this:  I can’t tolerate the air in Dallas, nor the indoor air at these Regina Caeli Environmental condos.  I slept fitfully for a few hours,  got congested again (none of my own bedding!) and at 4:30, tried to sleep in the car.   But I wasn’t tired!  That’s a sign my system in on high alert doing what it does to reduce inflammation by raising cortisol.

So I’ll be moving on.  Where to?  Camping in a remote area.   I’m going online now to look for places to camp in West Texas.  I’d like to visit Guadalupe Mountain.  Or I’ll go up towards Amarillo and spend a night or two at the beautiful Palo Duro Canyon.  I probably won’t have wifi or cell signal.  Right now, sleep sounds like a much better alternative.  

Tuesday, October 11, 2011

My next seven days camping alone in Oklahoma

During my next seven days camping alone in Oklahoma, my sinus drainage clears up, I stop and start cholestyramine, I question whether camping is doing me any good, and I long for a clean, dry house with plumbing and electric stove.

Once I adjusted to being alone, I had one glorious daywhere I woke with a clear nose and no more headache.  I dozed off for an extra hour, did the breakfast, water gathering and dishwashing chores, and resumed the writing project I’d left unfinished when I had to focus my energies on moving and camping.  What a delight!  I love writing and editing fiction.  Don’t know if it’ll go anywhere (e.g. if I’m any good) but it’s fun.  Did my resuming this project have anything to do with the fact that that very morning, I’d had a personal remote blessing from Guruji Trivedi in which I asked to be pointed toward my destiny in life? 

I don’t know if fiction writing is my destiny, but I sure get into it and don’t want to stop for food, nebulizing, pills, etc. I only want to stop I get cold from  hunger, or stiff  from sitting over the computer in a slumped pose of concentration.  I had hoped to be settled by November so that I could participate in NAMOWRIMO this year.  I’ve wanted to do that since I learned about it three years ago. 

I continued to find a few hours to write for the next three days.  My sinuses stayed clear.  But to my dismay, I found myself extremely tired.  I took afternoon naps, slept an hour later at night, and generally felt too dragged out to do anything.  I worried a bit that I was getting worse.  My orthostatic intolerance seemed worse, although it was hard to say for sure because my chores require much more standing than I normally did at home.  But where was the energy I’d felt this summer in August?  In sum, things were not developing as I wanted them to and thought they should.

One morning I realized the CSM (cholestyramine) was creating a lot of physiological stress.  I was experiencing this in two ways: as a feeling of being stressed and tired, and  downstream as a decrease in ADH with dry mouth and increased quantity and urgency of urination, I decided to stop taking it.  Lo and behold, the next day was better.

But I couldn’t keep away from the CSM after going to Starbucks, where I spent at least two hours inside the building because it was too windy and sunny to work outside.  I left with a swollen gland and knew I was in trouble.  I gulped down a teaspoon of CSM that evening in the hope of ameliorating the reaction in mid course.

The next day I was even more tired, despite starting out with a Master Blessing from Guruji Trivedi, which usually leaves me feeling more energetic than usual.  Again, my mind degenerated into questioning.
Is something in the environment adversely affecting me?  This was David’s theory from my first sniffle at Osage Hills.  There were several fires this year on the Nature Preserve, one of them only a few weeks ago, and when I drove west to Elk Mountain through the burn area, I could smell the acrid fumes rising from the charred earth.  Wind blowing from this area to the campground might be bringing toxic particles my way.
What a crazy way to live!  Yet I have friends who warn me that the direction of the wind brings ciguatera toxin from lakes and pesticides from crop sprayers and hydrogen sulfide from industries.  And no place is totally isolated from these currents unless one is able to hike into a vast wilderness area and live by one’s own wits.  The RV-ers move on when the wind changes, but packing up and setting up a tent requires too much energy for an impetuous shift.  I need to stay put for a while longer.

 By the end of the day I was doing better.  I decided my worries had been unfounded:  such are the fluctuations of the mind, rising and falling with currents as mercurial as the wind.  In the absence of such mental breezes, I could add up the benefits of my current situation:
  1. I was sleeping better consistently
  2. Elimination was working consistently better than ever before. 
These improvements were a sign that something good was happening, even if the increased fatigue and sleep were unpleasant.  It meant something internally involving peptide and hormonal regulation was recovering its proper function.  By reconstructing the meaning of increased fatigue as a sign of the body doing a lot more healing, I was able to stop the train of questioning about the wisdom of my Oklahoma camping choice.

The rain came on Saturday, soaking the earth and blackening the sky.  I wore myself out in the morning hammering stakes into the hard earth, cutting robe, and tying out every possible part of the tent to maximize its stability.  All night gusts of wind reaching 20 to 30  mph had been moving and bending the tent, disturbing my sleep as the nylon walls flapped and the metal rods shook.  With 50 mph winds on the way, I worked hard to transform the floppy nylon into taut, stable walls and felt proud of my effort.

But the effort left me exhausted.  I drove into the nearest large town with the intention of running a few errands and visiting the main branch of the public library, yet before I could do the first errand, I had to recline the seat and take a nap in the car.  Miracle of miracles, even without sleeping, this 30 minutes rest rejuvenated me.  I added the experience to the list of indicators that whatever changes were taking place were definitely for the best. 

Then I acted out of stubbornness:  I stayed in the library for five hours even though I knew the minute I walked into the foyer that it was not a good place for me.  I should have turned around, but I wanted it to work out and I told myself that I’d leave if the main reading room also smelled musty.  It didn’t at all, so I set up at a large, well-lit table and logged into wifi.  Within a short time I had the initial symptoms of a mold reaction:  my ankles got cold.  I put on wool socks.  I put on a jacket.   I might have left at this point but I stubbornly insisted on unsubscribing from every list I could so that I could limit reading e-mail to once or twice a week, or read it through my phone.  Then I had to do the upgrades, and the anti-virus software, and try to fix a computer program that required getting information online.  By the time the latter was done, with the help of a brilliant young man sitting near me (thanks Andrew), the library lights flashed to announce closing time.  I left with a swollen gland and a working computer.  Not too bad a trade, but one I don’t wish to make again!

Getting back to the tent in the rain, I had the typical trajectory of a reaction with increased energy that was most welcome given the challenge of removing bedding from the dry car through the pouring rain into the dry tent.  Then, a few hours later, cold and fatigue set in combined with the typically wired, unable-to-fall-asleep state with legs twitching and raring to run but no energy or motivation to move them.  Back in Ohio, this kind of reaction would hit me randomly about 6 times a month and I’d usually be awake until 5 am, sleep until late morning, and feel bedraggled for several consecutive days.  Thank God my reaction didn’t last as long this time!  By midnight I was sleeping soundly. When I awoke, I had the fourth stage of a reaction with sinus headache on the left side and messed-up bowels. 

It was still raining, but as a steady drizzle.  I was glad for the parched land, yet challenged.  I took myself and my wet clothes and the pillowcases I’d dropped out in the rain to a Laundromat, wearing my P100 NIOSH respirator without worrying about the stares.  It was still raining at lunch time, so I found a picnic shelter in another area of the camp, and moved into it, setting up my computer and my cooler and my fridge/freezer.  The daytime temperature had dropped from the 80’s to 61, and the metal benches were cold. Still I managed with layers of clothing and a wood blanket until 5 pm when the sun  broke through the blustery clouds and transformed the sky into a magnificent painting.

After I got back to my campsite and set everything up, I couldn’t get the stove to light and it started blowing and raining again.  I had to cart everything back into the tent, into the car, in schlep and pack mode until I could wave goodbye to site 62 and drive to a restaurant.  I chose a place on the eastern side of the nature preserve so that I could enjoy the beautiful sunset, with the summit of Mt Scott covered by a thick clouds while rivers of sunlight washed over auburn meadows and low hills. 

I’m still undecided about the CSM.  It’s normal to get an intensification of symptoms, which in my case would mean increased fatigue, stress, and orthostatic intolerance.  Yet it is these very symptoms which make living on my own challenging, and even more challenging at a campsite!  A friend suggested just taking one dose at night.  I tried that last night and ended up feeling terribly tired and ravenously hungry all morning – clear signs of increased stress hormones.  Could this really be what my body needs?  Should I try to push through it because doctors say this is what I need to do, or trust the wisdom of my body to guide me to better health in its own gentle way? 

I skipped CSM yesterday and slept poorly but I feel much better.  I’m going to stay off it until David comes to join me and can take over the chores when I’m wiped out.  Hope to keep myself out of buildings for awhile longer and see what happens.

Tuesday, October 4, 2011

My first three days alone

Day One (Saturday)
I dropped David at the airport at 3 pm and soon felt a mix of emotions, turned off the radio, and tried to stay present as I drove through town looking for a place to pick up wifi.  The principle feeling was sadness, which I felt as heaviness in my heart.  I already miss David. 

I also felt some excitement.  Camping alone will be a huge challenge for me, as I’m not an experienced camper.  I’m ready to take it on, but not as ready as I was before I crashed two weeks ago.  The wind was taken out of my sails when I had to leave with a chaperone, so to speak; and although I’m glad I had David along to help with the physical labor of moving and setting up camp, I frequently found myself angry because he was there---not so much angry at him, although that’s how my anger often manifested, but angry at the situation which had prevented me from doing something I really wanted to do.

I had to put up with the acrid smell of overheated grease to go online, lost the connection several times as I tried to upload pictures to my blog, and finally closed out before going through my e-mail.   The heat outside was leaving me feeling dehydrated.  My lips had started to get chapped yesterday, and although I drank often, I couldn’t seem to drink enough to rehydrate my body.

Dehydration is a common problem with CFS and CIRS because the hormones that control how much fluid we retain are often too low.  I know that’s true in my case.  I try to drink frequently, but because of the walk to the bathroom at the campsite, and the fact that I’m not beside a faucet with cold water, I often wait until I’m parched before getting a drink.   In the next few days, I hope to be more cautious with this as I don’t plan to drive around the way I did.

Back at the campsite, I piddled around feeling unmotivated and aimless – a sign of feelings being numbed out.  But when I finally got the tent re-organized, with my clothes out of the suitcase in piles, and took a hot shower, I felt hugely better.  My sadness now feels less like missing David and more like grieving for the loss of a life of comfort in my nice, modern house, for the loss of the lush, green lawns and woods of Ohio, for the loss of the freedom to go into buildings without getting assaulted by smells and toxins that provoke an immune response. 

I look around the campsite with its dried up grass, dirt, tents and RVs everywhere, and miss the privacy I had home in Ohio.  There, my nearest neighbor is 200 yards away; here, less than 20 yards.  I hear voices at the neighboring picnic table, wait in line for a shower at the rest room, and as my eyes scan the surrounding area, see more cars and structures than nature.  I will not be alone, nor lonely.  Yet I long for the experience of  a retreat in nature where I can sit quietly, alone, listening to the sounds of wildlife and water and wind.  I hope the place clears out Sunday afternoon. 

Since the crash, I’ve been harboring the fear that I either won’t get better, or that it will take me too long.  Once in a while, especially when symptoms of orthostatic intolerance emerged, it would pop up into my consciousness.  Today, after David left, I realized I was already feeling stronger.  I didn’t have the urge for a nap today.  Nor did I long to lie down.  This is to me the best sign that I’m doing the right thing.  Now that I’m alone, I think my transformation will accelerate, and I’m psyched.

Day  Two  (Sunday)
Waking at 6:20 after a good night’s sleep, I enjoyed the opportunity to meditate in the morning silence. My mind is quieting down from the chatter I’ve been experiencing since the crash 2 weeks ago, and I felt quite peaceful in the intervals between the thought trails.

Much of the cool morning was filled with chores.  I appreciated David’s contribution to cooking and dishwashing when he was here, yet found myself valuing the silence more.  I worked at a slow pace, feeling present with each task.

I was still quite congested, and now had loose bowels to add to my symptoms.  As usual, numerous theories came up for evaluation:  I ate something bad; I’m taking too much Vitamin C; I’m detoxing; I’m reacting to the milk in this Starbucks Chai Latte.  Whatever.  It’s another uncertainty of this complex illness.  Yet the amazing thing is, I don’t really need to know!  Perhaps an answer will come.  If it does, great.  If not, I go on with my program until the next step is 100% clear.

After breakfast I drove into the nearest town (25 miles) where I sat outside at a Starbucks reading e-mail and posting my blog.  The traffic noise and smells were mildly annoying but not disabling.  I made a cardboard awning to place around my laptop so that I can work outdoors.  It folds up in my laptop carrying case.  It works in partial shade, but not in full sun, where my limited contrast sensitivity restricts my vision.

Lunch was another mix of chores: move the cooler, change the icepacks, boil water to wash dishes, walk to the pump to fill the water bottles.  I was tired enough afterwards to take a long rest in my tent, during which I practiced yoga nidra and centering until I felt my body relax and experience the flow of divine energy, which I experience as a melting, tingling, and light-filled sensation.  I was still tired afterwards, so I lay in the tent reading an interesting novel, The Elegance of the Hedgehog.  Then it was time for the long walk to the shower to wash my hair in preparation for a special master blessing the next morning.  More chores around dinner, including lifting the heavy freezer and the cooler into the car and putting away anything that might attract raccoons.

By paying attention to my bodily sensations and thoughts, I was able to discover that CSM dehydrates me.  I made a point to drink more water, and decided not to take it tomorrow during the hot afternoon when I’m already hydration-challenged in this dry climate.

The last thing on my agenda was driving 2 miles east to get a cell phone signal so that I could join the Trivedi Master Enhancement Program monthly call.  Guruji is currently in Hawaii spending nine days in intense prayer and trance, during which time the energy from his transmissions is significantly intensified.  In answer to his request to share about ‘fear of the future,’ I spoke about my own lack of fear.  In the past, the entry of new symptoms (GI, respiratory) would have sent me spiraling into anxiety with fearful thoughts like ‘how will I manage now?”  “I’ll be too tired to take care of myself” leaching onto my stream of consciousness and sucking me dry of calm, positive thoughts.  No more, thanks to the blessings.  I might have one of those thoughts, but it slides away quickly, leaving me free to think positive and hopeful thoughts.

Day Three (Monday)
I woke with a splitting headache at 6:20, which is quickly becoming my habitual time, and has to be the most remarkable transformation for a girl who was a night owl even in childhood.  I felt very hot, checked the temperature (55 degrees) and put a fleece vest over my pajamas to walk to the bathroom – another remarkable experience for a girl who’s been cold since childhood. 

When I got back to the car to put away my toiletries, a yearling doe came close, about 3 feet away.  I know she is hungry, and even though we’re not supposed to feed wildlife, everyone at the campground does because the drought has destroyed all their food and they are starving.  A neighbor has left me a bag of corn, and I dropped a handful on the ground for her before going into my tent for my special master blessing.

Usually I rest in the master blessing energy for 25-30 minutes.  Today, I stayed in it for over an hour, savoring the freedom to let it run its course and wait for the urge to move, or the hunger, to call me away.  I realize I could live in that energy all the time.  I do, actually, if I think about it, for the divine is always with us, always filling our cup with unconditional love and joy.  Yet I rarely am able to pull out of my contracted state to experience it.  In the past, when I was doing well, e.g. in remission, I’d often get a few moments of this experience in meditation, but as soon as I relapsed, that experience would become inaccessible.   Guruji’s ability to make this energy available to my conscious awareness is truly a miracle! 

I went through my usual process of theorizing about the cause of my headache and came up with four theories which made sense.  Was I reacting to the polyurethane foam in my new Thermarest sleeping pad just as I’d reacted to the latex foam bed?  Was my down sleeping bag still provoking reactions despite its fourth washing with borax?  Was the sinus infection rebounding after taking my last Diflucan two days prior?  Or could this be detox from the powerful blessing last night?  I thought of solutions to all of them, believing they may all play a role. 

To the extent that detox was involved, I knew a coffee enema would help me.  With the campgrounds emptied of weekenders, leaving only six big RV’s and me with my tent, I knew the bathrooms would be empty enough to accomplish the operation in peace.  And I did.  Coffee enemas stimulates bile flow and liver activity and also raise glutathione.  This one relieved my headache.

Post lunch fatigue was extreme with the temperature in the shade climbing to ninety and the sun beating down on the picnic table and car.  I’d planned to walk over to one of the shelters, but felt too tired and full to go anywhere. I rested in a shady spot and then lethargically finished my chores.  I’m fantasizing about air-conditioning or swimming in one of the lakes.  Fantasize is the operative word, since both make me sick right now. In the meantime, a few sprinkles from the pump as I washed off my yoga mat gave me partial relief, and a few hours later, after two hours of sitting in partial shade, I felt restored.  I did yoga for the first time in over a week, enjoying myself so much I nearly missed the window of opportunity to prepare dinner in the little daylight remaining. 

Day Four (Tuesday)
I tried to sleep last night without a down quilt or bag, but I still woke with a sinus headache at 3 am, at which point I covered my chilly body with the luxurious loft of down and slept another 3 ½ hours.  It’s not as bad as it was yesterday, and already, in mid-morning, it’s barely noticeable.  I still think about renewing my prescription for Diflucan but don’t act.  Azole-type prescription drugs kill off sensitive yeasts and fungi and leave more toxic, axole-resistant mutations to flourish.  Better to get the terrain healthy enough for my own body to eliminate the fungal sinus infection.

I also think about how I might sleep without my Thermarest sleeping pad.  The asphalt pad is hard.  I’d need to pile towels and blankets over my yoga mat, but I have a pretty minimal supply with me.   So I consider the options: 
1.  sleep on the backseat of my car.  This gets a B- rating.  It is not the greatest environment since my carpets are a bit moldy and I need to buy a new vehicle.  But on the plus side, I’d like to experiment with sleeping in the car so that I can travel further west and crash for a night without having to pitch the tent and schlep out all the bedding.  I could cover another 100 miles each day without those laborious chores.
2.  Wait for the replacement of the Big Agnes air mattress I used over the summer to arrive.  I rate this option B.  David is mailing it tomorrow.  It should take 2-3 days, but sometimes priority mail takes 1-2 weeks.  When I mailed the damaged one back to Big Agnes in Steamboat Springs, it took 3 weeks!  Do I want to wait that long before I know if the Thermarest polyurethane is causing sinus pain around my left eye, temple, and cheek (just as the natural latex rubber foam mattress did)? 

I stare into the hole of inertia, like a giant yawning mouth.  I will do nothing, which is another way of saying, I will wait another day.  When the urge to act is compelling enough, I will do something.

In the meantime, my steps are more sprightly as I walk to the bathroom in the cool mornings, which assures me that my energy and well-being are definitely improving little by little.  I’m not feeling any loneliness, and the chores don’t seem weighty today.  I finally got an hour to return to editing the book I'm writing.  Only a hint of restlessness, a curiosity of what I might find if I drive west to the Arizona and California deserts.  I have not yet explored a desert climate, but hope to do so before this odyssey is over.

Sunday, October 2, 2011

Challenges and Disappointments during week one

Our first destination in Oklahoma was Osage Hills State Park.  It turned out to be a wonderful choice.  The park was clean, our site was spacious, and the air was good.  After drizzle and fog in St. Louis, we were ecstatic about the sunshine and clear skies.  We took an RV site with electric and set up our tent on a concrete pad.  That warm flat surface was delightful in the cool evenings, holding onto the heat of the day longer than the air, and in the late afternoons, we enjoyed its warmth, sunning ourselves and doing yoga.

I visited Frank Lloyd Wright's only skyscraper called the Price Tower in Bartlesville the first full day. There were lots of interesting historic buildings in town, which led me to wonder around in the heat longer than I should have.  The next day we went to the Tall Grass Prairie Reserve in Pawhuska.   This visit was all driving – perfect for a recovery day -- on dirt roads through the 32,000 acres of prairie.  The lure are the herds of bison roaming everywhere.  I got a few great pictures of those hairy mammals that once covered half of the US

By day two, the weather turned cold – low 50’s at night, overcast and blustery until 2 pm – then down into the mid ‘40’s the third evening.  I was cold at night and in the morning.   In addition, coughing and sneezing and blowing seemed to worsen.   My first thought was ‘a cold,’ until I remembered that the same reaction occurred when I arrived in the semi-arid landscape of eastern Colorado, where we thought I might be dealing with allergies.  But when I cleared up in a similar environment after 10-12 days, I developed a new theory: this is my body’s natural detoxification of whatever gunk I’ve collected in my sinuses.

Hopefully the same is happening now.   A CT scan of my sinuses taken Sept 6 by a Columbus ENT showed blockages in 4 areas.  His recommendation was surgery to drain the sinuses.  I visited a Dayton ENT surgeon turned allergist and had him look at my films: “They look completely normal,” he said.  But he did a deep nasal swab and gave me script for Diflucan (fluconazole).  Research studies have shown that a very high percentage of chronic sinusitis is caused by fungal infections, as I learned from a friend who visited Dr. Dennis.  His website, (CHECK) is chock full of helpful information, and was one of the reasons I asked the Dayton ENT about fungal causes after the Columbus ENT said there was no way to tell until a post-surgical biopsy.

As soon as I started to take Diflucan, I experienced some relief of my sinus headache.  So I’m operating under the assumption that I carry fungal infections deep within my sinuses which, in the absence of moisture and mold, are draining on their own.  Perhaps they are the source of the mycotoxins floating around in my body:  ochratoxins and tricothecenes per testing from Real Time Labs, Carrolton, TX.  Of course I can’t be certain I’m not reacting to some type of western plant pollen.  Still, if the reaction clears soon and leaves me feeling better, I’ll know it is detox.  

My second destination was Roman Nose State Park, about 3 ½ hours further west and south.  I chose it as a good location for a long-term stay because it was close to Oklahoma City (1 ½ hours), had a lodge with wi-fi and an outdoor cafĂ©, spring fed lakes with no history of algae blooms, and camp sites away from the lakeside.  But when we got there, we found the campsites unsatisfactory.  The sites away from the lake had no electric, the RV areas were like parking lots, the restrooms were a long walk, there were lots of annoying lights, and the dead grass was dirtied with cigarette butts and horse poop.  It made for a very unpleasant experience, and I felt a whole lot worse the next morning.  Plus, the bathroom was old and dirty.  Yuck!

So we talked to the ranger and got a recommendation for the Wichita Mountains National Wildlife Refuge. An online search said the bathrooms were ‘scary.’  We nixed that place and went down to Red Canyon State Park, only an hour south.  The red canyon cliffs were scenic, but it was incredibly hot.  To find a little shade, we took a site on the grass.  In the morning the dew was thick and it took nearly 2 hours of daylight for the sun to rise over the canyon walls and begin warming the picnic table.  

I was continuing to get worse.  I didn’t want to travel again, but I didn’t feel this place would work out for me for a long stay.  I sensed that the canyon was collecting polluted air; we could hear the traffic noises of I-40 throughout the night.  A quick online search revealed that the air quality in the nearby town of Hinton was not great (it was coded yellow rather than green).  A large chemical company had an experimental plot just above the canyon ridge, and the surrounding area was largely agricultural, which leads to many pollutants from fertilizers, dust, and insecticides/herbicides. So at 3 pm we decided to break camp and drive further southwest to Wichita.

What a treat was in store for us in the wildlife refuge!  Although the drought led to three wildfires this year, and huge numbers of trees are dying, the air seems clean and fresh. Wind whips across the short-grass prairie and cools the wooded campsites. Buffalo and long-horn cattle roam the fields and cross the roads.  Deer, hungry from the lack of berries and fruits, gather around picnic tables begging for food.  At night, coyotes howl and bark while cows bring their calves close to the campers for safety.  I haven’t yet seen any elk but my neighbors have.  Something for tomorrow.

Away from the small particulate matter in the air at Red Canyon, I hoped to improve rapidly, but instead, at bedtime I was too congested to breathe.  Even doing nasal wash with neti was insufficient to open up the nasal passages.  Fortunately, after another full day of heat, the sneezing and blowing has reduced by half, leaving me feeling quite optimistic that I’ll continue to clear up. 
Although the bathrooms turned out to be nice here, and the campground is packed with retired couples in their RV’s, all interesting people with lots of stories to share.  But this place is also not ideal for a long-term stay.  There is no cell phone signal at the campsite area, and one has to drive quite a long distance for wifi.  It will be a challenge to get onto the Trivedi group blessing calls I usually do 2x a week, while keeping up with e-mail and blogging will be difficult.  But I’m excited to see how I might feel once the sinus symptoms abate.  I’ve added low dose of cholestyramine to my regimen to bind and release the mycotoxins, and now my challenge is to find a way to resume the coffee enemas that were helping me to feel so much better in the past. 

More challenges on their way tonight, as I spend my first evening alone.  Will I be content or nervous?  Happy or lonely?  I feel a sense of joyful anticipation mixed with sadness at David’s departure.